Disease

When Ted struggles the most with his memory, I tell him he has Alzheimer's. He thanks me profusely. It might seem like rubbing salt in a wound to bring it up over and over again, but Ted forgets that he has a disease that is robbing him of his memories and of his ability to form new memories. When Ted is struggling the most, he often wonders what is wrong with him. He thinks he may be crazy. He worries that others will think he is stupid.

Because Ted often forgets that he has a brain disease, he becomes ashamed and tries to hide the fact that he may not know where he is, who I am, or what has happened yesterday or today. I cannot discern his current state of confusion by asking him what he remembers (as in, "Do you remember where you are?"). To do so either causes him great anxiety as he fears being exposed, or it insults him when he is having a lucid moment and knows full well where he is. I have learned to make assertions rather than ask questions. For example, when we are having breakfast, I may offer up observations such as "The weather here in Oregon is really nice. Barbara and I have loved living in this house for all these years." Simple statements of fact can offer him relief. They often bolster his ability to remember related information. He might reply,"Yes, I am really glad to be able to live with you". Or he might confess, " I was confused about where I was. Remind me how I got here." I stick to short declarative sentences. "You moved here when Juanita died". "Juanita and you lived in your own apartment at Stoneybrook just a few miles from here". Ted often visibly brightens has he gains some bearings and reconstructs an outline of his recent history.

Ted is an intelligent man. His ability to reason is still largely intact. But without memories, he has little information to work with. I offer him that information so that he can figure things out for himself to some degree. Once he is feeling more confident, he will often say "I will forget this again after a while". "I know, Ted, but I will remind you when you do. Feel free to ask me any time." Of course, Ted won't remember that I have made that particular statement. However, I can help him feel safe. I can give him reason to trust me. He will not recall the particulars, but he has an emotional memory that can serve to reassure him.

Each day I try to learn a little more about how to help Ted. It is a process. It is an opportunity to serve.

Music

Johnny Cash 1969 from Wikipedia

Sometimes Ted and I just run short of things to say. That happened last night after dinner. I found myself asking about the radio his family had in the 30's. I launched into a description of transistor radios and then MP3 players. I realized I was probably being pretty dull when I had a brainstorm. I would get my MP3 player and show it to Ted and discuss things like how it can hold thousands of songs. But I realized that even with a hands on demo, it was still pretty dull. So I played a bit of Johnny Cash and let Ted listen through the head phones. I could crank the volume because he is very hard of hearing. His face lit up.

"Would you like to hear more?" I asked. "I'd like that. I think I'd really like that", he replied.

So Ted listened to Johnny Cash live at Folsom prison. His head bobbed. He sang along. He shouted out. When it was time for bed it took a little while for him to calm down. "That is my music. That's my people's music." he cried out.

I love the nice surprises.

Variability

photo credit: I am what I have found by Lomo-Cam

Each day is new for all of us. We may be more or less energetic. More or less motivated. Sadder or happier. Because we have a memory, we can see the variation during recent days. Even so it can be hard to avoid thinking that we have always been in our current state. For example, when I am depressed, I find it harder to believe that I was happy in the past.

Imagine how much more difficult it would be to understand our ups and downs if we had no memory of them. The ability to put things in perspective is seriously impaired. If Ted feels weak today, then he believes he has always been weak. He will say that he has good days and bad days, because his reasoning still works. But he has no memory of what happened in the past few days.

Goal setting is difficult. During a recent spate of good days, Ted became excited about the prospect of visiting his son, Bruce, in Illinois. I was surprised that over a period of two or three days he seemed to remember the idea of a trip. He looked forward to it and became impatient to know when he could go. Then a couple of days ago, Bruce sent a card with words of encouragement. Bruce mentioned that he was happy to hear from Barbara that Ted was looking forward to a trip to Illinois. Ted suddenly became quite angry. "I'm not going anywhere! Whose idea was this? Why didn't you talk to me about it?" I had just left the house, so it was Barbara who had to maneuver through this minefield. "Daddy, the trip was your idea. We were trying to help make it happen." Ted thought that was absurd. I suppose just then he was tired and perhaps anxious at the prospect of traveling. Since he had no memory of discussing it some days earlier, he felt strongly that the trip was some plot being foisted on him.

Most arguments contain an element of "I said" vs "you said". Even between two people with excellent memories, recollections vary. Two of us may have heard the same statement and interpreted it differently. If one can find documentation such as an e-mail, they may hold it up as evidence that their version of the story is right. The other may read it and explain that they remember the e-mail, but that they also remember seeing quite a different meaning or tone in it.

Because Ted has virtually no memory, arguments are futile. He cannot support his side of the argument by citing things that happened in the past. During the stress of attempting to argue, he may forget that he cannot remember. His reason is in tact. His current emotions are available to him. So he is likely to insist that there is no way he could have said or done something that is incompatible with his current emotional state. If Barbara or I try to use logic, his ability to reason is there, but he has to fabricate his own idea of what has happened in the past. His emotions may make it very difficult for him to believe our version of recent events.

It is hard enough to reconcile differing views between two folks with memory. It is much more difficult with someone who has virtually no memory. Even when we are able to reach agreement, Ted will often forget in less than 10 minutes. He relapses to taking a position based on his current emotional state.

It is very dangerous to say, "Don't you remember?". It is a common phrase in most disagreements. It is devastating for Ted. He may despair when he is challenged with that phrase, or he may become angry and agitated.

I try to stay in safe territory with Ted. For example, I help him reminisce about the farm or the war. Lately, he is fabricating entirely new versions of even his most vivid memories. There is no point in trying to correct him. I can offer up words or phrases that may entice him down memory lane, but I cannot coerce him to walk where I would like him to.

The safe territory keeps getting smaller. There are fewer detailed memories that I can help him access. Even when Ted can remember events, he may forget the words need to describe those events. I give him a chance to grope for the right word, but once it is obvious he is stuck, I offer whatever seems most likely. Sometimes I hit right on the mark. Other times my suggestion merely confuses Ted and I scramble to redirect the conversation.

I have feared that I will tire of rehashing the same stories with Ted. Sometimes I have. But I am surprised to find that more often we have an exchange that I find interesting and even enlightening. It works best if I immerse myself in the story as it is told. I can consider how I might have handled a situation. I speculate on why Ted made certain decisions. It is also important to believe that I am performing a valuable service by fully giving my attention to Ted.

Despite the many difficulties occasioned by Ted's handicap, our relationship is deepening. My respect for Ted grows. I learn important lessons. I hope that will continue as the dementia progresses.

Marriage

photo credit: The Power of Love by Nelson D.

Ted and Juanita were married for 67 years. Their love grew beyond my imagining. I saw it in how they interacted in recent decades. I saw it in how they interacted in Juanita's last weeks. I also see it in how Ted grieves. The first thing he does when he awakens is to look next to him to see Juanita. For more than twenty thousand awakenings she was there. Now for dozens of awakenings, she is not. It seems unlikely that Ted can live long enough to have Juanita's absence feel normal. Although it hurts to see Ted's grief, it is inspiring to consider how wonderful and how long his marriage was. It is a joy to know that such love can exist in an imperfect world, between two imperfect people.

Ted tells me that although Juanita has died, their love is still very much alive. I believe it will live on after Ted dies too.

Prejudice

I want the world to make sense. I look for patterns, cause and effect, anything that can help me to address current problems or prepare for coming challenges. My desire for understanding and competence has a downside. I may prejudge based on biases and partial truths.

Ted's experience of Alzheimer's stretches me and reminds me to beware of prejudice.

Yesterday, Ted became restless. I was in another room when I heard him open the patio door and go out onto our deck. It is the first time in his five weeks here that he self initiated going outside. I found him at the far end of the deck gazing across a grassy field to the forest.

"I saw two deer here yesterday" says Ted. It is true. He is fascinated by the local wildlife. Nonetheless I am surprised that he can remember that specific incident. Most of his experiences each day vanish from his mind soon after they occur.

"I could walk down those stairs to that grass". I mentally shrug his statement off as the wishful thinking of someone who has long since lost such capabilities. However, there is no point in contradicting him. "Sure" I say "you could do that." This is one of those times I decide it might be best to redirect his attention. "If we go through the house to the front door we can walk out and see the big tree the neighbors cut down."

"Let's do it" says Ted. He is seated in his wheel chair and pulls himself along with his feet on the floor. I offer to push. "I've got it" he says. We come to a tricky bump at the front door threshold. I offer to help him over it. "I can do this." And he does, even though it requires him do sort of a hop in his wheelchair that I have never seen him do before. As Ted wheels down the ramp to the front driveway I am tempted to hold the wheelchair handles in case the slope is more than he can handle, but by now I have learned to hover nearby but resist the urge to intervene. He manages the downward slope just fine. Then he begins to move up the grade of our concrete driveway.

"Pretty steep here" I offer. "Not too bad" says Ted. We spend a bit of time checking out our front yard and doings at the neighbors, and then we head back to the house. "Want to see the hot tub?" I offer. It is the first time we have toured the front of our house this way. Ted brightens. "Sure".

Ted wheels his chair very close to the end of our front porch but I resist the urge to hold onto the wheelchair in case he misjudges where the edge is. After I show off the hot tub and discuss how we use it, Ted speaks up again. "I could walk right down those stairs". Four steps, no railing. But again I think it is just wishful thinking on his part. I am shocked when Ted rises from his chair and haltingly walks toward the steps. It is harder than ever for me to resist physically intervening. I position myself for a catch, or at least the ability to break his fall.

Ted puts one hand on the wall near the head of the stairs and makes his way down with only a bit of swaying. By now I am astonished. In the preceding weeks he has treated the two small steps to our sunken living room as though they were a treacherous glacial crevasse. What is going on?

"You have a walk right around the house to stairs to the back deck, don't you". How could Ted know that. This end of the house is invisible from the inside. We move across the patio that the hot tub sits on. I show him that the walk is possible, but incomplete. Rocks. Rough ground. There is a stretch of ten or twenty feet that I have not finished.

"That's O.K. I can still walk there." Now I'm really concerned. But once again I position myself as a human cushion. "Since I haven't finished this part maybe you'd like to hold onto my arm", I offer. Ted sees the sense in that and we make our way down the rough little slope to the foot of the back stairs to our deck. A full one story flight of stairs.

"I could walk right up those stairs and be on the deck again". How could he have oriented himself so well? For weeks I have had to remind him where his bedroom is when he is sitting in our dining room in plain sight of the door to his room?

In recent weeks I have worried that Ted will struggle to negotiate a high curb in a parking lot. Now he stands before ten or twelve steps and says, "I can go right up these".

I mention that we could back track and find a much shorter flight of stairs. No dice. Ted has clearly determined to tackle this flight. I stand behind him and wonder if I will be able to stop a fall or will just join him in tumbling backward down the steps. One step. Two. Three. Sometimes shaky and swaying. But he grips the railings tightly. Before I can even worry much, he is at the top of the stairs pushing open the sliding door and headed for his chair in the dining room.

We had left the wheel chair back on the front porch. The walker is in the house. Ted has navigated a hundred feet including two sets of stairs and a small rocky slope.

"I could go right up those stairs." He points to the long flight from our kitchen to the upstairs bedrooms. Before today he has made it clear that he never intends to go to the second floor of hour home.

"Yes, you could"

As I write this, it is the next day. Ted is still abed. I cannot plan on another day like yesterday.

The days differ greatly. He may sleep all day on chairs and sofas. He may grieve the loss of his wife and of his memories. I may have to remind him who I am.

Or he may walk upstairs for a tour of the second floor.

Location

A View through the Afloat Sculpture

by roberthunt1987

We take for granted the fact that we know where we are and how we got there, both in space and in time. I realize more and more that dementia messes with Ted's ability to know. It reminds me of the classic movie story line where a character suffers amnesia. The plot involves their search to understand who they are and how they got there. However, dementia throws in some very different twists to the plot.

Some days Ted remembers much more than he does on other days. On the good days I think he remembers that he sometimes has bad days. But on the bad days, I don't think he can remember that he has good days. It doesn't even have to be a new day. If Ted thinks deeply about the very vivid memories he has from his childhood, it is almost as if he is reliving those moments. Then suddenly he realizes he is an old man in a place that is only vaguely familiar. The thread of life events that lead up to now has many broken spots and the pieces that do remain get jumbled out of order.

Sometimes I can help Ted by anchoring him with a few of the memories that so far are rock solid. Yesterday he could remember his boyhood and the farm, and he could vaguely remember that he went to college. But he had forgotten how he and Juanita had gotten together. He had forgotten that serving in the Pacific during WWII had interrupted his life.

I said, "I bet you remember being helped with finding the home keys in your typing class." He lit up immediately. That was a key event in his getting to know Juanita during high school Then I said, "I bet you remember standing behind a tree, trying to make yourself as small as possible as a Japanese plane strafed you". "Yes!" he said, "It's so vivid I remember every detail. I remember touching spots where the bark had been shot off the tree, but no bullets had penetrated to hit me."

I went on to recount such things as the fact that his college education had been interrupted by his military service. On the other hand, the GI bill made it possible for him to attend University of Illinois and finish his degree.

Eventually it was as if Ted had regained his footing following a particularly violent earthquake. He regained the sense that he was anchored in time and space, rather than adrift and helpless.

Of course, I wonder what the future holds. Will those most vivid memories fade away and leave Ted without an anchor? Yet I can only wrestle with what is. My view of what will be is too limited to spend much time thinking of.

Pride

Photo by justinbaeder

Ted has lived with us for about a month now. Until today, I was pretty impressed with myself about how I was handling it. Please understand, I have been stressed and I feel that. Nonetheless, I felt like I was doing a great job. I had researched and considered and developed all sorts of strategies for helping Ted through one of his tough days. At times it had been a bit of a strain to be patient. But, hey, I was succeeding!

Deep inside, I knew that I was due for a fall. I knew because I heard myself think, "Hey, this caring for a person with dementia isn't that big a deal if you do your homework and stick with a few basic principles. Why do people say it is so tough?" I needed a strong dose of humility. I got it.

I woke Ted from a nap so that we could have lunch together. He began to relate a story that he had told me a dozen or so times before his nap. The story may have had a core truth in it, but the variations were huge each time he told it. He and Juanita had been on a beach somewhere and met a wildlife photographer. That much was consistent. Not much else was. The beach was in Florida, Oregon, Brazil, or somewhere else. Juanita and Ted were photographed by accident. Photographed for a fee. Photographed when they tripped a camera sensor. They never saw the photo. The photographer printed the photo on the spot. He mailed the photo to them. They were both in the photograph. Only she was in the photo. Those are just a few of the variants.

Ted became increasingly aware that his story was not consistent. He was very frustrated by his inability to get the details right. I listened calmly. I offered encouragement while acknowledging his difficulty. I tried to nudge Ted toward the positive aspects of the memory. None of that seemed to help for more than a second or two. I came up with what I thought was a very clever idea. I grabbed one of Ted and Juanita's photo albums and said, "I've got a job I think you'll enjoy. Search through these photos and see if any of them are the photo from the beach." The idea was dead on arrival. It was worse than dead. It stirred Ted up even more. There were many photos of Ted and Juanita with other folks. Ted became more and more disturbed as he realized that he had no memory at all of those other folks. He also realized that if Juanita were here, she could walk him through each photo, identify the people, and let him know when it was taken.

"I've lost my memory. I've lost Juanita. I'm not even a person any more. I am just a blob that exists."

"But Ted, you know your room here. Let me show you. See how many familiar things are in this room!"

"Yes, they are familiar, but I can't remember why they are. I don't know where they came from"

There were several more failed attempts on my part and I was beginning to panic. What if Ted was like this a lot? How could I handle it? I thought I knew what I was doing. Wrong.

I thank God that Barbara returned home from her walk about that time. She listened to Ted and said something like "Oh daddy, you will be o.k." And in a few moments she had him laughing and joking as if the whole melt down had never happened. I saw her do it, but I don't understand how she did it.

O.K. Time for the truth. The truth is that I will come up against difficulties with Ted that I will not be able to handle well. I will survive. But I hope it is a long time before I get that warm fuzzy little thought about how good I am at this caregiver business. I really hate to pray for more humility, because it almost certainly would require additional humiliations. I don't want to pray for more patience. That always seems to require suffering.

God, forgive me. For I do not know what I do. Thank you lord for sending help when I needed it most. Help me lord to feel compassion for every caregiver, regardless of how "good" they are at care giving. Help me to care more about helping Ted than I do about proving how capable I am.

I need you God.